Thursday, June 16, 2011

A and I went to the ER on Monday because I was breathing heavily; we were afraid the increasing difficulty might be due to a common, and dangerous, side-effect of Yervoy. They ran lots of tests for breathing (which of course was better while we were there), and found nothing. They also gave IV morphine for knee pain. (I have a pathologically fractured left tibia—meaning that mets are weakening my bones. I was also using an inadequate brace.) The morphine had worn off by the time we got home, but no one had taken any new films of the injury.

So on Tuesday morning, I was back in pain again and we didn’t have any real solutions. A called 911 for my labored breathing and increased pain in my left knee. I’d awakened that morning on the floor, rolling around, trying to get up and go to the bathroom by myself. I clearly wasn’t fully awake; I was screaming in pain, and the brace I was using wouldn’t protect me anymore. (I normally summon her, either by calling out or with the bicycle horn, when I need help getting to the bathroom in the night.) I was stoned on legal painkillers, but not stoned enough. A called the local ambulance, which could have taken me to the local hospital that contracts with Kaiser. But the drivers knew the ER staff had never seen what I had; I remember one saying I would “scare them.” (Not with my degree of disorientation; this is Stockton, CA. But my level of disease would have been a new challenge to them.) So the ambulance drivers helped get me into her car, and she drove me to the Kaiser hospital in Sac.

They took blood samples, and new images of my leg—we were insisting on a solution for the pain. They gave me a new, more stable clamshell cast, which I can remove to bathe. What matters most in my memory, and to my present reality, is the conversation with the ER doc. She came to my bed; A was sitting on the other side of me. I had just taken my first infusion of Yervoy the previous Friday. I’d never felt sure of it. I honestly felt more pressured into it by my doctor, than willing to stay in the fight myself. A and I have always been on the same page. I was afraid it wouldn’t work; I was afraid it would only work a little. I’d take baths and watch the tumors grow; I’d hear my own Darth Vader breathing, and feel some ground slip underneath me.

This doctor, God bless her, gave us both permission to admit that. I must have said something about the pain, frustration, and uncertainty I was in. She answered, “How committed are you to chemo?”

A and I looked at each other, and we both teared up. We knew. And it was okay. I looked back at the doctor. I knew the words were mine to say: “Not in our hearts, really.” She, God bless her, cried with us. And she got us connected with a palliative care doctor, who is working with us until he can get us connected with hospice.

This is the care I need. This is the care I finally had the readiness, and the courage, to ask for. I’ve been fighting for three years. That’s enough. Just saying, “I want hospice,” gives me so much peace. I don’t need to fight to the bitter end. I don’t need to be a warrior anymore. I can let go as my body wants to, into as much comfort as possible.

My warrior friends, and my cheerleader friends, will be sad for me. I’m sorry. And 40 does feel shockingly young. I would have loved to have been cured from this, to come back and live my new life with everything I’ve learned. But when I asked to see my most recent PET image, and it looked like a Jackson Pollack print of my upper body, that was enough. I don’t need to stare steel-eyed against all my invaded organs. I already see a breastplate of tumors when I take off my shirt (seriously! Almost like medallions all along my clavicle); feel them just under sea level when I touch my upper arms and legs. I know what’s inside me, and I know how tenacious it is. My oncologist had told me that Yervoy was basically my last, best hope. I could have exploded when the ER doc said she’d asked him what the realistic chances were and he’d agreed, “two months, best guess.” Yeah, they want to give us hope. But hope isn’t bread. And a “hope” that leaves me in misery because I don’t know how or when to let go (it isn’t “giving up”) is misleading. Reaching for the next straw until the offerer’s hand falls empty is not the way to ease into the awareness that you’re dying. And that it’s okay to die. All bodies do.

Are there things I’d have loved to do, and to keep doing? Of course, yes. But it’s time to ease into peaceful letting go. It’s time to pass the work I was doing, on to others—they already had picked up Safe Ground anyway, and there will be others who will celebrate Eucharist on the street, outside, at the river, until homeless people feel welcome in the churches. The ministry of welcoming all people into the kindom of God will constantly expand, until every soul is taken up into it. What I lose by dying soon, is time I love with friends on earth who love me. We will find that, as one friend says, on this side of the river and the other.

I will want visitors. All who want to see me, who know how to contact us, please do. If you don’t know where we are, just ask. (My e-mail address is in my profile; A's is in the previous post. We're both on Facebook.) I don’t have the endurance for long goodbyes, and again I honestly don’t know how much time I have here. Give time if you can; love me and us any way that you can. A and I both know how much you support us. Know that we love you.

We want to keep me at home as long as we can. We won't move me until we need to.

Meanwhile, I’ll write as I can. What I know about my self-expression right now: Expect memory recall that’s alternately not-me fuzzy and freakishly clear, and expect honest emotions. A will write for us both, when and if I can’t. We both appreciate your friendship more than we can say.

Kirstin and Andee,Neil and I love you so much. We know you're making the right decision and that you feel it's time to enter hospice. That said, I just spent the past five minutes crying, howling and tearing at my clothes.

Someday in a perfect world we'll be together and I'll treat you to a shopping spree and lunch in Union Square.

I wish my arms were 1,000 miles long so I could hug you both right now.

Thank you so much - your ministry is going on in this different form and I appreciate it. Receiving hospice ministry is wonderful, loving and caring. What you have started on the street will continue, you know. In tears, trusting you are not in pain. Ruth

Kirstin: 40 means 4 decades we have been blessed to have your heart in this world with us. I honor this next part of your journey and know you have chosen well. It's true--all our bodies will die. But it is how we have lived that makes all the difference--whose lives we have made better by our being here. Blessings to both you and Andee. Susan

Kirsten, even though I have only known you through an internet connection, your kindness and wisdom have been an inspiration. What you write puts all my selfish little worries and doubts into perspective. My partner, Lisa, and I have often wished we could afford to come spend a few days with you, for the gift of being able to meet you in real life.

Our love and prayers are with you always. And we send our love to Andee as well, and hope that you both will be carried gently in God's hands through this transition.

Peace be with you both, and love to you, and my prayers and those of many others. And thank you for not hiding the tough bits of your life away. There should be a James Bond babe named Guts Galore. I nominate you for the role.

Oh, Kirsten. Such a tough decision, but a necessary one to give you your peace. I have no platitudes, just love. And prayers for both of you. I'm glad the weight of the fight is off of your shoulders so you can just be for the remainder.

Dear Kristin Thank you for your honesty. thank you for sharing your thoughts and all that went into your decision. Such a brave decision that will give you control over your life and I hope relief from your pain. Blessings on you lovely one;you who share my own daughter's name. You are a gift to so many. with love Doris from St. Aidan's

Y'all have been a model for my life throughout; love and grace abound in your struggle, with all being 'meet and right". It has been an honor and a profound teaching to share this with you: however distantly it may sometimes feel, it also has given me a real sense of grace through the Communio Sancti.

It is clear you are at peace with this decision and that it is time. You have fought with valor, now it is time for rest. We who remain will step into your place, and hold you always in our hearts as you make this next journey.

"And that it’s okay to die." I have found in the past year that folks don't want to hear that, but it is the one "seeing" I received this year that has given me a peace, having prepared for and cheated death three times this year, for all shall be well, for living or dying or dead, we are Christ's, and Christ is God's, "And so all shall be well, and All shall be well, and all manner of thing shall be well." Finally, someone sharing their real life with us! Telling us what we need to hearQ God continue to bless you Kirsten and Andee and us through you both.

Kirstin, you have not ceased to be a warrior. You have merely switched from storming the ramparts of the fortress of your tumor to storming the gates of Heaven in anticipation of your arrival. (It's not a matter of "Are you ready for Heaven?"--it's a matter of "Are they ready for YOU?")

I am sad--incredibly sad--that this day has come. Yet I am also relieved that that you were able to receive this news and make this decision with the grace you have shown these last three years.

May God richly bless you and Andee in this journey. You are loved by many (including me), and I'm glad to be one of the "flashmob of grace," as MadPriest put it!

Your precious smile and amazing courage are matched by the beauty of your voice as you've allowed us to be with you on this part of the journey. Surely we shall all be together again and laugh and hug and cry. Thank you for sharing so much with us.

Even though I have kept in tough with you poorly since I left Sacramento for Russia, I will always remember your inspired words at the Thursday night group at Trinity Cathedral. I will also always remember your support for me when I was received into the church. Thank you for sharing the gift of your inspired spirit with us all.

You don't know me, but I've followed the blog for awhile. I graduated from seminary awhile ago and cannot imagine going through it while on chemo. I just wanted to say thank you for writing what you have. It has meant a lot to me. I wish you a cure, but if that does not happen in this world, I hope your entry into Heaven is glorious and peaceful. I expect that the witnesses may be cheering for you!!

You both are in my prayers. I can send a little money if you need it and if you can tell me how.

I haven't followed your journey closely these past few years, but whenever I have I have been moved by your courage and honesty and grace, and that of those who have walked with you. Thank you for sharing your experience and for sharing this holy choice--and Jane R's picture of the two of you with such radiant smiles--with all of us.

I have a beautiful memory of our mass and lunch together in Berkeley before this all started....And, from your words about handing on your ministry, new inspiration to pray about whether I too can be part of taking the sacraments out to the folks who don't feel welcome to come in for them. Thank you for that as well.

Deep peace, blessings and prayers to you and A. as you take these last steps together, and I will offer the Eucharist for you as soon as I can.

Kirstin and Andee, I came to know you through the blog, sent here by Jonathan and Mimi.

I have prayed continually through the journey. Now that you are preparing for a new journey I will continue to pray. I volunteered for Hospice for a few years and I know that they will give you the comfort you need and the space you need.

Thank you for sharing your beautiful lives with me, a stranger, and helping me to see God.

Prayers for you both and gratefulness for the gift your honesty & bravery brings us all. Thank you for sharing your life's journey - all of it - so openly, you are a teacher for me of what it is walk this path. Thank you, friend.

Brother Causticus and Deacon Thorndike Andrewes hold you in light and love and are "persuaded neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth," --nor cancer -- "nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord." We are lighting a candle for you in a side chapel of St. Euphemesius-By-The-Freeway that burn brightly day and night throughout your journey home.

No, it is not giving up...it is having the wisdom and courage to accept that this is also part of the journey. Though we have never "met", I have followed your odyssey online and have long been surrounding you with light and love. That will continue evven as you continue to walk into the light.

I am sad for you and happy for you if that makes sense. I don't comment often and I wanted you to know you have been in my thoughts and prayers. Thank you for sharing your journey, it's been tough to read yet inspiring. I lost my Dad 3 short months ago to cancer and I still have a hard time hearing about it. You are a wonderful person who will be missed by many.

Kirstin, I haven't been in contact with you for a long time -- years -- and I had no idea about any of this. I'm so very sorry. You have come to the end of a long journey, and it's okay for you to rest. It's okay. All my love to you. (musicmommy)

This is the first time I've met you, because so many FB friends have shared your blog online today. Thank you for sharing part of your journey with the rest of us. May you be enfolded in the knowledge and peace of the grace and love and communion of God, until we are all reunited where there are no more tears.

Kirstin and A, Blessings as you enter this part of your journey. May it be easy, may your burdens be lifted, and may you have that sure and certain knowledge that God holds you. Will hold you in prayer.Peace, Heather and David (from CDSP, now at VTS)

Kirstin, I've hesitated writing because it's been difficult for me to find the words...God bless you for sharing your life with so many through your work and through this blog. I think your decision was a wise and courageous one; and I think you and Andee will find Hospice to be a blessing.

Ever since you began blogging about your illness, I've included you in our prayers at our church...in our Prayers of the Church, where we pray for individuals; especially when I've been assisting, and leading those prayers, I've felt as if I've been carrying you and yours with me to the altar. We also have a "put and take" prayer program at our church, where individuals write prayer requests on slips of paper and then we share them during the Eucharist...so you've had many people praying for you these many months. And we will keep doing it.

Nothing -- nothing -- can separate us from the love of God in Christ Jesus. But you know that.;-) Love and prayers.

Kirsten, I have never met you but consider Andee a friend and know that it has been a difficult journey for you both. You made the decision you needed to make. The burden of fighting is lifted. My prayers are with you both. God bless you both.Candy

Like several here you don't know me but I've been following your journey for years through this blog. Reading this post brings both sadness and relief ... relief that you have found peace in not fighting as much as you found in fighting.

Kirstin, you are bringing a little bit of heaven to earth as you witness so honestly and courageously. We are all connected and today I see Christ a little more clearly. Thank you. may God bless you with deep peace, and even joy, as you journey on.

Oh Kirstin, what can I say? God bless you woman, you are remarkable and I am so privileged to know you and pray with you, to be in community with you out here.

Memories that I have of you are... The first time you came to my (old) blog and commented on a post about Rachel Corrie. I loved the sound of your (written) voice and then realized that I"knew" you from Mimi's.

I recall once walking into my pastor's office and noticing that he was reading your blog; he must have gotten the link from mine. It touched me, still does, how God weaves us together, near and far. We are the Body of Christ.

You and Jane in a photo from two summers ago is in my head and now the photo from a few days ago is right there with it. I am so glad that she got to connect with you both times.

Another memory, reading of your time in New Orleans and I especially recall you writing about St. Anna's and the words about entering your missionfield that were written on the wall of the church or over the door, maybe.

The image of you leaving there and entering your mission field have never left my heart. Today I see you entering, as ever and always, your mission field.

Different fields maybe, same mission, although ever deepening.

My heart and prayers are with you and with A. I wish that I could come to meet you, an impossibility for numerous reasons. We have met in the heart and we will meet in the Kingdom.

God bless you and know that you are held with much love and with many prayers.

This is a brave, graceful decision that you've made. My partner is a hospice nurse and I can't even begin to describe how much of a ministry this is. Claire and I will both keep you in our prayers as you continue on this journey.

Oh, Kirstin and Andee, I feel like calling you my children even though I have never seen you.I join you, Kirstin, in your letting go. I had read about your tumors through Jane.It is good to read your update and I'll keep reading you.I love what David just wrote. Like him, I'll continue praying till you're barefoot and laughing at the gates of Heaven.A star shower of blessings, child ♥

Never doubt that you are loved, but know that Jesus loves you more. Be gentle with yourself and each other - especially in those moments when this disease is at its most violent. May Brother Death greet you with the same grace and love as you plan to meet him. You are being lifted up in prayer every step of this journey.

I know you only through your posts and our common membership in RevGalBlogPals, but I thank you for your honesty and your trust in yourself. Your words about knowing when it is time ring so true--as someone living with cancer who lost my sister to it just a couple of months ago, it is a blessing to be able to say, "yes, it is time to stop." Praises to the brave and wise ER doc who knew this.Blessings to you and A--may your remaining time be rich, and full of loe and God's blessings.

I've been a lurker on your journey... time to let you know that you have spoken deeper words of truth and wisdom to me than you'll ever know. May peace and joy surround you... and all those you love...

I am in awe of your courage and grace as you begin your final journey. I will miss your insightful words and incredible sense of humour, my Gooey friend. (remember Friday night chats?) Thank you for those memories and for making sure I didn't live a sheltered life (way up in the Great White North) never having known what a geoduck was.xolucykimbra

This is the first time I've intersected with your journey, and I read this post with tears. Thank you for being you in your living, and thank you for being you as go graciously and peacefully to the next place. Many blessings and much comfort in the days ahead.

My friend Kathy knows you through me and I have shared your journey with her. She wrote me this morning:

"She's done so much in such a short time, touched so many people both physically and through her blog. She's inspired and impassioned, transformed and touched so many people and she's right. Her work will go on. The world is a better place for her having been here, no matter the length of time. Her aura is brightening to a translucent, almost blindingly white and she's preparing to ascend on angel's wings. I feel humbled to have known her, as sporadically as I did. Thank you for sharing such an extraordinary human being with your readers on your blog."

Kirstin, What a wonderful post on surrender. You have fought the good fight--but they never say much about allowing God to take over. I am grateful for the peace you have found. My prayers are for you both.

and this also is a gift to the rest of us...the clarity and candour with which you have related what is happening. God love that ER physician for asking the right question at the right moment. I thank God at every remembrance of you both.

Timing is everything Kirstin. Go into that blessed place with the love and blessings of everyone who has been enriched by your passage in this place, even those of us who have been inspired solely by your writing.

Kirstin, as the 87th commenter here, I’m sure I don’t have much new to add. But I must add my words, hugs, and tears along with your other friends. It has taken me a full day before I could post a comment here. I had to get my emotions and thoughts under control.

When I read this yesterday, I was at the office at the end of my workday, and tears were flowing down my face. While I read your blog in a window on one part of my screen, another screen was open with the Decorah eagles … who were just – for the first time since their early-April hatching – flying from their nest to nearby tree branches. Somehow, that seems a perfect metaphor … as I read your words: One life winding down … Another just finding its wings.

Kirstin, my dear … although it is very hard for me to hear where you are now and what you are facing … my “better self” recognizes that you are much like those eagles: You are moving to another phase, where you will find your own spiritual wings. That won’t keep me from crying for you. But it will give me some peace. And I do trust your judgment that you’ve made the right decision.

I can’t remember how long we’ve been in dialogue on our blogs and other venues. But I know I have come to treasure you and the spirit within you.

Write here when you can … for as long as you can. Like so many others, I will be awaiting every word.

Kirsten...you will be missed your passing will leave a hole in many hearts mine included. I know from my late husbands fight with chemo how it only prolonged his pain. He died peacefully and he was ready even though I wasn't. I know God has a reason for taking you from this world to his and I know you will be in a better place. I send you love a wish for peace and happiness that will last till the end. Sweet dreams dear one. Love Cheryl Wilhite

I have enjoyed all your writings (even though I'm new, I went to older postings) on your call and ministry, Katrina recovery, the homeless and your ministry to so many. Maybe God's purpose for your life has been all those words. I hope you leave them up for a while. You have led a grace-filled life and I have learned many things from you.

May God grant you a pain-free and peaceful journey home. Tell Her how sorry we are for what we've done to Her planet and people. And ask God to please reconsider the artichoke. I'm just not sure what She was thinking with that one.

I'm a first time reader sent here by a Facebook friend. I also am a cancer survivor and I work for the National Office of the American Cancer Society. Thank you for sharing your journey and your brave decision with all of us in the blogosphere. It inspired me and reminded me why my colleagues at the ACS and I work so hard. And it reminded me yet again that everyday on this earth is a gift.

I was away over the weekend and was not on the computer. You were in my thoughts and prayers during that time. I knew that your last posts sounded as if your time was growing shorter here. It was the right decision at the right time. Prayers for grace, pain relief and peace. I will miss you. Andee you are in my prayers too. Blessing to you as you walk this road with with Kirsten.Kay

Kirstin,Your unending bravery & strength is inspiring. You've touched many with it, probably more than you realize. When your journey is done, and you're on the other side, please give Kate a hug for me. Thanks & Godspeed, my friend. -Missy from Maine

Just to add prayers from another RevGal across the Pond...Your grace-filled journey through these 3 years has inspired so many, including me...and the ripples that you have made will not stop as you move from time into eternity....and from love to Love.God bless you always

Kirstin: borrowed and slightly altered from the Anglican BCP, a prayer that I think fits your situation.

"We seem to give her back to you, dear God, who gave her to us. Yet as you did not lose her in giving, so we do not lose her by her returning. Not as the world gives, do you give, O Lover of Souls! What you give, you do not take away. For what is yours is ours always, if we are yours. Life is eternal; and love is immortal; and death is only a horizon; and a horizon is nothing but the limit of our sight."

May God's peace carry you and Andee and all your loved ones through this most glorious part of your life. Thank you for all you have written and learned and passed on to us. You are powerful and strong and always, always will be for each of us.

And we will continue the fight to find stronger meds that work on this insidious disease.

Oh, Kirstin, this world needs you for at least another half-century. But this world is so much better for you having been in it, for however long that is. I am doing so much thinking. I want to do better, to make things better. Every effort I make from now on will be inspired by Kirstin-energy.

Ray Riess said:I wept when I read this most recent blog, Kirstin, grief and sadness, and also joy and relief, tears that just wanted to come. It has been a privilege to spend time with you recently. JOY! RELIEF! There is so much of that in your posting. And now the future, whatever it is, with your supporters by your side loving you and praying for you, and for ANDEE too. Our language doesn't allow the plural of "your" to show. Andee has been with you every step - she journeys with you. I send you both love and prayers. Love the photo with the heart shaped glasses. So good for the sunny day you head towards. Much love, Ray

A dear friend shared your blog post with NE and it deeply moved me. Convicted me about being afraid to live my life. I am so sorry that your healing is not here. Your courage to walk down this road God has for you-bless you.

Kirstin- I suspect we had almost every class together in jr high and high school. But I didn't know you well then and don't know you at all now but for FB and your blog. But I am glad to have reconnected with you these ways to know of your journey and to see a sliver of what you are made of. You are clearly loved by many whose lives you have touched and their words are a wonderful reflection of your impact. I will hold you and Andee in my hearts and thoughts. Hugs.

I'm a longtime reader from the other side of the Atlantic. It would not honour the road your travelling to not comment.Your integrity to be fully human and authentic is a light in the world.The footprints you have trodden in life will be lasting.Mary Oliver the poet has written a poem- Blackwater woods I read it with love for you todayJane xx